The experiences of patients with amyotrophic lateral sclerosis of their decision-making processes to invasive home mechanical ventilation-A qualitative study.

AIM: To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision-making processes whether to choose invasive home mechanical ventilation or not. DESIGN: A qualitative study. METHODS: A phenomenological-hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting. RESULTS: Three themes were evident in patients' accounts of the decision-making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision-making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision-making processes using shared decision-making. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

Patients' perspective in the context of proton beam therapy: summary of a Nordic workshop.

INTRODUCTION: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics. MATERIAL AND METHODS: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic. RESULTS: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed. CONCLUSION: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.

Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation-A qualitative study.

AIMS AND OBJECTIVES: To explore everyday life experience of relatives of people with amytrophic lateral sclerosis (ALS) living at home with mechanical ventilation and formal caregivers. BACKGROUND: ALS is a rapidly progressive disease affecting not only the patient but also close relatives. A burden is placed on relatives affecting their mental and physical health in settings where they provide care. Few studies have examined the everyday life challenges of close relatives with formal caregivers at home and home mechanical ventilation, which often prolongs survival. DESIGN: We undertook a qualitative study with a phenomenological-hermeneutic approach inspired by Ricoeur. Eleven close relatives were interviewed, and the three-level analysis method developed by Dreyer and Pedersen was conducted. The Consolidated Criteria for Reporting Qualitative Research checklist was used. RESULTS: Four themes were derived from the data during analysis: Vulnerable relatives fighting to keep track of everything, Formal caregivers-a distressing relief, A prison without personal space and We are in this together until the end. CONCLUSIONS: Close relatives of persons with ALS are burdened with everyday life challenges despite having formal caregivers at home, and they feel imprisoned. Despite these challenges and concerns about the end of life of their relative, they stay until the end. RELEVANCE TO CLINICAL PRACTICE: There is clearly a need to investigate interventions in clinical practice supporting close relatives to prepare them for what to expect during a prolonged disease course.

Sexual dysfunction after inguinal hernia repair with the Onstep versus Lichtenstein technique: A randomized clinical trial.

BACKGROUND: Sequelae after inguinal hernia repair include pain-related impairment of sexual function. Pain during intercourse can originate from the scar, scrotum, penis, or during ejaculation. The aim of this study was to investigate if the Onstep technique resulted in better results than the Lichtenstein technique regarding pain-related impairment of sexual function. METHODS: This study was part of the randomized ONLI trial (NCT01753219, Onstep versus Lichtenstein for inguinal hernia repair). Separate reporting of pain-related impairment of sexual function was planned before the study start, with a separate sample size calculation. Participants were randomized to the Onstep or Lichtenstein technique for repair of their primary inguinal hernia and followed up at 6 months postoperative with the use of a questionnaire specific for pain-related impairment of sexual function. RESULTS: A total of 259 patients completed the 6-month follow-up, 129 in the Lichtenstein group and 130 in the Onstep group. Among the patients operated with the Onstep technique, 17 experienced pain during sexual activity 6 months after operation compared with 30 patients operated with the Lichtenstein technique (P = .034). Both subgroups that experienced pain during sexual activity had a median visual analog scale score of 0 with an interquartile range of 0 to 2 (P = .349). The Lichtenstein technique resulted in new pain in 14 patients, whereas the Onstep procedure gave new pain in 7 patients (P = .073). CONCLUSION: The Onstep technique was superior to the Lichtenstein technique in terms of pain during sexual activity 6 months after operation.

Associations between education and physical functioning and pain in adult Danish cancer survivors.

BACKGROUND: Late effects after cancer diagnosis and treatment are common, but only few studies have examined the role of social factors in developing these late effects. The aim of this study was to examine the association between educational level and physical function and pain among cancer survivors two years after diagnosis. MATERIAL AND METHODS: The study population consisted of adult Danish patients with a first-time cancer diagnosis who were sent a questionnaire in 2010 and followed up in 2012. In total, 4346 returned the first questionnaire shortly after diagnosis and 2568 returned the follow-up questionnaire. After exclusion of 177 due to missing information, we included 2391 cancer survivors in the analyses. Physical function and pain were measured using the EORTC QLQ-C30. Linear regression analyses were conducted separately for men and women, and adjusted for demographic and clinical characteristics. Additionally, analyses were stratified on comorbidity. RESULTS: Differences in mean scores according to educational level were small. Physical function was better in women with medium (2.8; 95% CI 0.1;5.4) and higher education (3.4; 95% CI 0.9;5.9) compared to women with short education. In contrast, men with medium education reported lower physical function (-2.9; 95% CI -5.7;-0.1) than men with short education. Compared to women with short education, we found lower pain scores among women with medium (-5.0; 95% CI -8.7;-1.4) and higher education (-3.4; 95% CI -6.7;0.0). Similarly, men with higher education experienced lower pain score (-3.4; 95% CI -6.9;0.1) than men with short education. The role of educational level differed between those with and without comorbidity. CONCLUSION: Educational level is slightly associated with physical function and pain among cancer survivors. However, mean differences in this study were small and below what is considered clinically relevant.

Chronic pain after inguinal hernia repair with the ONSTEP versus the Lichtenstein technique, results of a double-blinded multicenter randomized clinical trial.

PURPOSE: The open new simplified totally extraperitoneal (ONSTEP) technique for the repair of inguinal hernia was presented some years ago with promising initial results regarding chronic pain. We conducted a randomized clinical trial investigating the ONSTEP technique versus the Lichtenstein technique with focus on postoperative pain. The aim of this paper was to report the results regarding chronic pain from follow-up at 6 and 12 months for the participants in the ONSTEP versus Lichtenstein trial. METHODS: This study was conducted as a randomized double-blinded clinical trial in male participants with primary unilateral hernias, having surgical repair of their hernia at one of five participating general surgical departments. At surgery, participants were allocated (1:1) to the ONSTEP or the Lichtenstein technique for inguinal hernia repair. Participants were followed up with questionnaires at 6 and 12 months. The primary outcome was the proportion of patients with substantial pain-related impairment of daily functions at 6- and 12-month follow-ups. RESULTS: From April 2013 to May 2014, 290 male patients were included in the study. Regarding follow-up for pain, a total of 259 patients (89%) completed the 6-month follow-up and a total of 236 patients (81%) completed the 12-month follow-up. Regarding pain at the 6- and 12-month follow-ups, no difference was found between groups. Two patients operated with Lichtenstein technique developed severe disabling chronic pain postoperatively, which was not seen in the ONSTEP group. CONCLUSION: The ONSTEP technique was not superior to the Lichtenstein technique regarding chronic pain following repair of primary inguinal hernias in males. TRIAL REGISTRATION: https://clinicaltrials.gov NCT01753219.

Docetaxel-related side effects and their management.

Docetaxel is an effective treatment approved in five key cancers, but its effectiveness in clinical practice can be compromised by sub-optimal side-effect management. The aim of this review was to investigate the extent of the published work on specific docetaxel-related side effects and to provide, where possible, evidence-based recommendations for their prevention and management. PubMed and the American Society of Clinical Oncology (ASCO) databases were systematically searched for articles published in English over the past 5 years and 2 years, respectively, and pertaining to six side effects identified as being common to the majority of docetaxel regimens and indications and of particular relevance to the oncology nurse. The Cochrane library was also searched. A total of 103 citations were identified, 14 of which discussed strategies for the prevention or management of febrile neutropenia (n=6), hypersensitivity reactions (3), fluid retention (1) and nail changes (4). No articles were identified that related to asthenia or neuropathy. Based on the literature review, evidence/guidelines-based advice for the use of G-CSF in febrile neutropenia is provided. The evidence base with respect to the other side effects does not permit the formulation of recommendations. It is the experience of the authors, however, that the severity of symptoms experienced by patients is generally mild and the side effects are for the most part easily managed with prophylactic and supportive care measures. It is, therefore, important to share and build on experiences, through research and discussion, to maximise the healthcare professional's ability to offer the best standard of care to patients.

Docetaxel-related side effects and their management.

Docetaxel is an effective treatment approved in five key cancers, but its effectiveness in clinical practice can be compromised by sub-optimal side-effect management. The aim of this review was to investigate the extent of the published work on specific docetaxel-related side effects and to provide, where possible, evidence-based recommendations for their prevention and management. PubMed and the American Society of Clinical Oncology (ASCO) databases were systematically searched for articles published in English over the past 5 and 2 years, respectively, and pertaining to six side effects identified as being common to the majority of docetaxel regimens and indications of particular relevance to the oncology nurse. The Cochrane library was also searched. A total of 103 citations were identified, 14 of which discussed strategies for the prevention or management of febrile neutropenia (n=6), hypersensitivity reactions (3), fluid retention (1) and nail changes (4). No articles were identified that related to asthenia or neuropathy. Based on the literature review, evidence/guidelines-based advice for the use of G-CSF in febrile neutropenia is provided. The evidence base with respect to the other side effects does not permit the formulation of recommendations. It is the experience of the authors, however, that the severity of symptoms experienced by patients is generally mild and the side effects are for the most part easily managed with prophylactic and supportive care measures. It is therefore important to share and build on experiences, through research and discussion, to maximise the healthcare professional's ability to offer the best standard of care to patients.

Nail changes due to docetaxel--a neglected side effect and nuisance for the patient.

GOALS OF WORK: The objective of this study is to estimate the frequency and severity of nail changes due to treatment with the cytotoxic drug docetaxel and, secondly, to estimate how the nail changes effects the patients cosmetically and functionally in their daily activities. Finally, we want to clarify whether fungal infection could contribute in causing the nail changes. MATERIALS AND METHODS: Fifty-five patients with metastatic breast cancer in treatment with the cytotoxic drug docetaxel participated in the study. They filled out two questionnaires about their experience with possible nail changes. The frequency of fungal infection was examined. At each of the two visits, information about the number of treatment cycles, dose of docetaxel the patient received, frequency of lymph oedema, previous treatment with chemotherapy and the reason of discontinuance of treatment, if relevant, were registered. Finally, photos were taken to document the nail changes in hands and feet. MAIN RESULTS: Fifty-eight percent had some degree of nail changes and an increase to 88.5% was seen after three additional cycles. A large proportion of the patients experienced the nail changes as a cosmetic nuisance, and more than 32% had functional problems. CONCLUSION: Nail changes occur more frequently than previous studies have shown. Furthermore, our study indicates that the nail changes are affecting a large proportion of the patients, both cosmetically and functionally, which may lead to a decrease in their quality of life. No significant association was found according to the possible relation between nail changes and fungal infection.